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For HIV patients, a lesson in resilience

For HIV patients, a lesson in resilience

Ethel Nakimuli-Mpungu's psychiatric research is helping Ugandans with HIV practice resilience in the face of depression. Her work directly helps people live happier lives, and has won her high praise at home and abroad.

An older woman often spent her group therapy sessions in tears. All her children were far away, she had no money, and on top of all that she had HIV. But over time, regular meetings with her fellow HIV patients changed everything for her. 

The group provided the woman with a constant reminder that she wasn’t alone in her struggles, recalled psychiatric epidemiologist Ethel Nakimuli-Mpungu. It gave her strategies to combat her depression and the strength to engage people in her community every day. 

“She went from being sad and crying all the time to being active and participating with others in small projects,” said Nakimuli-Mpungu, of Makerere University in Kampala, Uganda.

These support groups, the result of work by Nakimuli-Mpungu and her colleagues, are raising consciousness of mental illness in developing countries. And the work has earned her national and international praise: She was honoured by Ugandan President Yoweri Museveni with the Presidential National Independence Medal of Honor on 8 March – International Women's Day. She was also one of five recipients of 2016 Elsevier Foundation Awards for Early Career Women Scientists in the Developing World, which are given through a partnership between The Elsevier Foundation, the Organization for Women in Science for the Developing World (OWSD) and TWAS. 

Her research has received such recognition partly because, in sub-Saharan African countries like Uganda, mental health is often ignored by doctors, nurses and other health workers. Resources to find and help mentally ill patients are scarce, so many people in need of help never get any. This is the gap that Nakimuli-Mpungu is working to fill. She and her colleagues have collected studies done across sub-Saharan Africa documenting the connection between depression, alcohol use and HIV. They’ve also tracked the effectiveness of psychotherapy for HIV patients straining to live happier lives and keep on top of their antiretroviral therapy.

And her work has helped to reveal a central underlying problem: Uganda and many developing countries need to break down the stigmas associated with HIV and depression and save people from negligent health care systems that fail to screen HIV patients’ mental health. 

An unchecked epidemic

A general lack of knowledge about depression creates a colossal obstacle, Nakimuli-Mpungu said in a recent interview. People don’t even know that their emotions can get out of balance, and that clouds their ability to recognize their own depression or to recognize symptoms in others. 

Worse still, that lack of awareness extends to many health workers who for years have been denying that their HIV patients have mental health issues. Worried about losing credibility with their colleagues and communities, they don’t even want to look for symptoms of depression among their HIV-positive patients.

“They say their patients don’t have those issues and don’t want you to screen them because they don't want it to be known that the patients they care for may have an alcohol problem or depression,” Nakimuli-Mpungu said. “They’ll tell us that to our faces.”

“It’s no joke. These symptoms can become severe. If someone feels useless and hopeless, they feel they don’t need to take care of their families or their children." –Ehtel Nakimuli-Mpungu

This allows the problems to spiral out of control until they their only recourse is to refer patients in crisis to Uganda’s sole mental hospital, which typically only deals with patients who have severe problems.

Much of Nakimuli-Mpungu’s work entails teaching the health workers to accept that mental illness is like any other disease and can be detected before the symptoms become severe. She and her colleagues train nurses in clinics to screen HIV patients for depression, anxiety and substance abuse as they’re waiting to see the doctor. Have they lost their appetite? Are they struggling to get a good night's sleep? The health workers discuss such symptoms with the patients and guide them toward receiving an evaluation. If they're diagnosed with depression, they have the option of attending group therapy sessions. 

Learning how to cope

Members of psychotherapy groups learn that they’re not alone. They lean on one another as they struggle, and in time they form close friendships. They learn about depression and how it can move from mild symptoms such as lethargy to severe symptoms such as substance abuse and suicidal thoughts. They also learn coping skills for managing their depression, such as accepting situations they don’t have the power to change and that it’s acceptable to ask for help when they need it. Many Ugandans have never heard much about depression, or about how to manage it. 

“We teach positive ways of thinking,” she said. “We teach them how to challenge negative thoughts. We call that unhelpful ways of thinking. We teach them to replace unhelpful ways of thinking with helpful ways of thinking.” 

The groups also discourage self-destructive coping behaviors, including the common problem of alcohol abuse. Nakimuli-Mpungu said it’s not unusual for group attendees to show up drunk and to be disruptive, forcing the group leader to raise a discussion of the negative effects of alcohol. This is one of the biggest problems, and those who drink excessively are more likely to drop out of the groups. But those who stay until the end report reductions in their drinking. 

Depression also badly disrupts how well HIV patients adhere to their HIV medication. In a review of the research on depression and HIV published in AIDS and Behavior, Nakimuli-Mpungu and her colleagues looked for studies in Africa tracking depression and adherence to antiretroviral therapy. They found that depressed patients were 56% less likely to stick to their treatment regimen. 

“It’s no joke,” she said. “These symptoms can become severe. If someone feels useless and hopeless, they feel they don’t need to take care of their families or their children. They don’t need to take the medication. They have no motivation. That’s what the depression does. They couldn’t take care of themselves and could not go to work.”

Therapy groups provide real hope. Last year, Nakimuli-Mpungu and her colleagues published a study in Lancet HIV finding that those who took part in the groups were less depressed and better able to function in day-to-day life than those who received only HIV education. That research was supported by a grant from Grand Challenges Canada, a prominent global health research organization that is pushing to address mental health challenges in developing countries. TWAS Fellow Peter Singer is the organization's chief executive officer.

She and her team have also collected survey responses from group participants which detail the suffering they endured and the relief provided by the programme. Being in an encouraging environment helped them reduce their alcohol consumption, be more responsible to their families and have the drive to work productively. Some expressed renewed feelings of importance and hope, and happiness about being in a position to counsel others who are going through the same ordeal.

One participant, initially skeptical, reported a dramatic shift. “After sharing my personal painful experiences, I really feel something in my life has changed,” the patient said. “I used to lock myself in my room when I am annoyed and unhappy. Now I find myself sharing my meals with other people, something I used not to do.”

Sean Treacy